Hi.

This isn't a how-to. I'm not a pinterest mom. I'm a firm believer in faking it 'til you make it. This is for all the millennials out there who secretly have no idea what they're doing. I'm looking at you, millennial caregivers.

Apr 4

Apr 4 The Positive

As I continue to tell friends and family about our current situation, I'm forced to hear the positives of the diagnosis. It could be worse. In one way it is a relief that we have an answer for what has been going on. We can't be in denial anymore. We are forced to look ahead and get my mom the help she needs. I can start to separate my mom from the disease and look at it logically.

For many people, the onset of HD begin between the ages of 30 and 50 years old. My mom has only begun to develop symptoms in recent years. There's a positive. The doctors told us that they still don't fully understand the disease but from their experience, a later onset sometimes means a slower progression. So, hopefully we have more good years ahead than bad. We need to schedule a follow up review with the doctors to get a real understanding of where we are with this thing.

My brother and I will both be tested in the coming months. Many people who are at risk don't get tested at all. It's a scary thing to be faced with your own mortality. I get why you wouldn't want to know. It's like looking into a crystal ball. We all know we are going to die, but I think we'd prefer not to think about when or how. I can think of a lot of other ways that would be a nicer way to go than this.

For me, I have always been a planner. I love organizing and labeling and keeping an orderly schedule. Our wedding was planned down to the minute. I want to take the test in order to plan for the future. If I am positive, we will do IVF or whatever it takes to have an HD-free baby. The disease will end with my generation and my children or my children's children will never have to know this feeling that I'm feeling right now. If I am positive, we can prepare for the future mentally, economically and emotionally. If I am positive, I will try everything that is out there to slow the progression. I will drink green tea and eat blueberries until I turn green and blue.

My test is in less than four weeks. Then the painful waiting process for results begins. The results will change the rest of my life. But, at this same time, they will change nothing at all. Even if I am positive, this disease has been living in my body since I was conceived and there's nothing I can do about it.